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When I Try to Describe My Undiagnosed Illness to a Healthy Person

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You wouldn’t believe me if I described to you what my life is like with chronic illness. You couldn’t fathom what the last decade has been like for me from the severe debilitation, to the abundant lab draws, to the constant poking and prodding, and the idea that I am living this mess without an answer. You will likely think I’m imagining it, or exaggerating at best. I promise you I am not. It is pretty much impossible for a healthy person to wrap their head around what I am about to tell you.

My symptoms have been going on for 11 years; since I was diagnosed with an autoimmune thyroid condition. They have waxed and waned during all of these years, but this past year has been my worst with an abundance of bad days. I wake in the morning barely able to get out of my bed as the weakness is so profound that standing is nearly impossible. I sit during my shower and lean my damaged body against the counter as I brush my teeth. Any chance I get throughout my day, I sit. I am constantly thinking about how I can get to my next seat. And with a 2- and 5-year-old to look after, this life feels impossible at times.

My upper arms are sore and depleted of energy, so picking up my 2-year-old is both painful and extremely difficult. I try to limit going up and down the one flight of stairs in my house to two times a day. And many days I am unable to take my son to an activity or play date due to the sheer exhaustion felt deep within my body; the fatigue that has no words to do it justice. My entire body is devoid of energy.

I’m telling this story because there are many people out there, like me, without a diagnosis. Society tends to put less stock into illnesses that don’t have a name. We are often seen as “crazy” because our extensive medical testing has come up with no answer. Oftentimes we are struggling more than you would think, because with no diagnosis there is no treatment. My symptoms are as real as it gets. I promise you, no one wants to live this way for over a decade. I can assure you, when I say I am too weak to stand, I am genuinely too weak to stand. Because after going through the torture and struggle that I have, I would be the first one running a marathon or standing for an entire day, just because I could.

So please know that I am doing my best. I know that I don’t look unwell and I am fully aware that I have a smile on my face as I try to act as normal as I can when you see me. Some days I am doing a little better and my smile may be genuine as I live for these days. But many days I am barely making it and my smile is my way of pushing on despite this mess I’ve been dealt.

So if you have a friend who has been struggling with an undiagnosed illness, reach out to them. Chances are they’re struggling more than they let on. It can be a very lonely, enduring path, and I promise you that your thought will provide them comfort at a time when life has been unbelievably challenging in a way no human is prepared for.

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Lead photo by Thinkstock Images

Originally published: November 23, 2016
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